Quinn's 'bold' plan for care of developmentally disabled

Public workers union, parents group object to closing state-run centers and shifting all residents to community settings

October 09, 2012|By Monique Garcia, Chicago Tribune reporter

Dony'a Scott, center, stands with his parents Gwendolyn Jones-Scott and Donald Scott outside the group home in La Grange that he shares with three other people. Jones-Scott originally had fears about moving her son out of a state developmental center, but now says the move has been good for her son. (Antonio Perez, Chicago Tribune)

When Gwendolyn Jones-Scott learned Gov. Pat Quinn wanted to close a state center for the developmentally disabled outside Springfield, she was terrified about what would happen to her son.

The family had spent years struggling to find care for Dony'a Scott, whose autism and other disabilities meant he was prone to lashing out, sometimes violently. The 24-year-old ended up at the Jacksonville Developmental Center, where staff put him on a strict behavior-modification plan, and Jones-Scott said her son soon seemed happy, sociable and at peace.

Four months after the state moved Scott to a small group home in La Grange, Jones-Scott said her fears have subsided. Not only is her son still doing well, he has his own room. And he's a 20-minute drive away, instead of the four-hour haul downstate that she had gotten used to.

"It's a godsend. It feels so good to know that he is close by," she said. "He calls me all the time and says 'Mommy, I love my new home.'"

The case represents a sea change in the way Illinois cares for people with developmental disabilities, which include a wide range of physical, learning and behavioral problems such as cerebral palsy, autism spectrum disorders, attention deficit and hyperactivity disorder and other mental disabilities.

Instead of relying on large state-run institutions that house hundreds of people, Quinn's administration wants to focus on smaller, more individualized settings. The idea is to allow people with developmental disabilities to live more independently with the help of caretakers, whether that be in small group homes or an apartment down the street.

The state plans to close four of its eight centers for the developmentally disabled during the next two years. In all, 600 of the roughly 2,000 residents will be placed in new homes.

Supporters say the move is long overdue, arguing that Illinois has continued to warehouse people at expensive and out-of-date facilities even as other states moved away from that approach. They say smaller settings within the community will allow those with developmental disabilities to have a better quality of life while ultimately saving the state money.

But critics, including Illinois' largest employee union, contend that some residents simply are better served in institutionalized settings. They say specialized care simply isn't available in certain parts of the state, particularly after social service providers have struggled under years of state budget cuts.

The union and a parents group also have raised questions about how the administration has handled moves that have already taken place, saying that in the rush to close facilities, some families are being pressured to make decisions they aren't ready to make.

The first facility scheduled to close is the one in Jacksonville, about a half-hour west of Springfield. Initially slated to shut down on Oct. 31, administration officials acknowledge they may miss the mark as the state works to match residents with new places to live.

Finding the right setting isn't as simple as locating a group home with space — it's a process that can take months for each individual.

First, residents and family members are consulted, then a comprehensive dossier is drafted. It includes everything from a person's favorite television show, dietary needs and health risks to whether physical or speech therapy is needed and how long someone must help brush the person's teeth each day.

Then the state works to match people to their preferred housing situation. Some like group homes, others may want to live in an apartment with a roommate they've grown close to. The process grows more complex when it comes to making sure residents will have the support they need, from doctors and therapists to caregivers who could do everything from help with the laundry to shop for groceries.

Because the state has for so long focused on institutionalization, that sometimes means waiting while providers hire new workers and upgrade housing to make it more accessible. It can be a slow process, particularly for people with more complex needs, and administration officials acknowledge it will take time to create the infrastructure needed to make the change successful.

"Half the people think we are going too slow, and half the people think we are going too fast," said Derrick Dufrense, administrative director at the Community Resource Alliance, a consulting firm the state hired to spearhead the transition at Jacksonville. "But I'd rather be criticized for going too slow rather than rushing and realizing we made a mistake with people's lives. Ultimately, this is not just about finding someone a new program of care, but allowing them to get a new life."

Opponents say it's not that easy: Some people simply can't live in such settings and need the structure that they've come to know at a state institution, whether that be because of severe mental disabilities, behavior problems or particularly fragile medical conditions.